3. Results
Summary of Participants
Sixteen participants completed the study combined across three groups. Demographic characteristics for the child, parent, and HCP participants are summarized in Table 2.
Qualitative Results
Based on the overlapping perspectives across the three groups of participants, saturation was achieved 16-18. Four major themes emerged (with subthemes): (1) challenges living with CF; (2) coping; (3) building independence; and (4) bridging gaps in services. Samples of direct quotes are included in Table 3 to provide support for themes and subthemes.
Challenges to living with CF
Emotional challenges
Common emotions experienced by children with CF included worry, fear, and confusion, often about medical procedures and the progression of the disease. As children learned more about the nature of living with a progressive disease, they experienced greater worries, and these worries had a functional impact (e.g., difficulty concentrating at school due to worrying about health status).
Social challenges
Social challenges experienced by children with CF included feeling different from peers. Children with CF must spend time completing various treatments that their peers do not and may miss out on activities. Participants also described children feeling self-conscious about CF and attempting to hide noticeable aspects (e.g., coughing) of their condition to avoid appearing different from others. Children with CF experienced feelings of worry, shame, or guilt, related to how their CF is impacting their families. As a result, children attempted to provide reassurance to their parents that they are doing well in attempts to reduce parental stress. Finally, participants believed children with CF had little connection with other children or adults with CF.
Treatment challenges
Self-managing treatment regimens were described as placing an extra responsibility on children with CF. Participants described the time-consuming nature of treatments and how treatments often interfered with other activities that children would rather spend their time doing. Moreover, parents expressed the difficulty their children had adhering to treatment regimes when their mood is low. Parents also highlighted the difficulty in balancing the enforcement of their child’s treatment regimen, with allowing for flexibility in adherence in efforts to improve their child’s mental well-being.